Is it time for the public to start funding cancer research?

Last September, I wrote an article for the Telegraph’s Saturday magazine about a breakthrough cancer treatment that had been developed in Sweden: a genetically engineered ''cancer-eating’’ virus. The science was impeccable (the work had been done at Uppsala University, one of the leading research institutes in the world); photographs in peer-reviewed journals showed wobbling tumour masses disappearing into pinpricks; lab studies suggested the side effects would be no worse than a mild bout of flu – and yet the researchers were about to discard the new treatment.

The Swedish scientists could not raise enough money to continue their potentially revolutionary work. And yet, the therapy had been specially designed to treat the type of tumour that killed Apple’s co-founder Steve Jobs: a neuroendocrine cancer. All the researchers needed was £2 million: less than one per cent of the British tax that Apple didn’t pay last year. But the EU and the Swedish government had no suitable grants for research into this type of cancer, and because the scientists had not patented their discoveries, no pharmaceutical company would finance further work, since without a patent there was no way for the shareholders to make a profit.

Feeling like a dangerously interfering, 46-year-old schoolboy, I’d Skyped the lead researcher, Professor Magnus Essand: ''If I could get a campaign together and raise the cash for you, would you restart work?’’ I asked. ''Are ordinary people allowed to direct advanced medical research like that?’’

''Of course!’’

''How soon do you need the money?’’

''Six or seven months?’’

We missed his target; but we were only two weeks and three days late. Last Saturday, with the magnificent help of 3,846 donors – including many Telegraph readers – thousands of hours of freely donated time by people from more than 30 countries, plus the generosity of a soft-spoken Arizona oilman with office chairs in the shape of petroleum barrels, the iCancer campaign handed Prof Essand the cheque.

The reason I became involved in the Uppsala research was because my best friend, editor and occasional co-writer Dido Davies, award-winning biographer of the novelist William Gerhardie, has pancreatic neuroendocrine cancer, exactly the same sort as Steve Jobs, who died in 2011. Her NHS specialist medical team at the Royal Free Hospital in London is superb – attentive, always available, endlessly encouraging and generous with medical support. But there is a limit to what they can do and there are not a lot of treatment options for this disease. I began trawling the internet and the medical journals in the British Library. One evening, watching a lecture on YouTube about new cancer therapies, I spotted a poster in the background of the video with a link that had led me, via a chain of other websites, to a footnote in an academic paper, which mentioned the undeveloped work from Uppsala University.

Is the cancer-eating virus an entirely new mode of treatment for Dido’s cancer? Possibly. But it had been investigated only under artificial conditions. As Prof Essand warned me repeatedly, there was a good chance that the successes in the test tube and in mice would not be replicated in patients. The £2 million he and his colleagues Dr Justyna Leja and Professor Kjell Öberg needed was to start clinical trials: the scientifically vital procedure to find out if the drug would also work in humans. Without those extra tests, the only way patients could take advantage of this potentially magnificent, potentially useless cancer-killing therapy was if they broke into Prof Essand and Dr Leja’s lab and injected it themselves.

Two weeks after my magazine article appeared, the Telegraph published a follow-up to it. It was by Dominic Nutt, a communications specialist who worked for international aid agencies, ''flying in and out of war zones’’. A photo of him showed a fit, happy-looking, married 44-year-old man with two young children. He also had neuroendocrine cancer, had read my piece – and he was all for breaking into the lab. ''Would I opt to take the untested virus therapy myself?’’ he demanded in his article. ''Would I risk all for the chance to see my daughters go to school, and to hold my wife’s hand as we celebrate our 10th wedding anniversary – instead of forcing them to watch me die, tubed up and in pain? Hell, yes!’’

We arranged to meet at the Wetherspoon’s pub in Victoria station, London. Opposite the Krispy Kreme Doughnuts stall, over six pints of beer and two packets of roasted peanuts, we set up the iCancer campaign. Dominic brought in a friend, a brilliant social media expert called Liz Scarff and her boyfriend, Dave Carter, a cameraman. They put the iCancer campaign online using a website called Indiegogo, which specialises in raising money quickly for an enormous range of causes, by spreading the word around the web. Not to be outdone, I recruited a brilliant friend of my own: Colin Midson, a freelance literary publicist who’d worked on the Harry Potter books. None of us knew the first thing about medical fundraising. Our ignorance was our strength. We weren’t worried about upsetting people, we had no particular respect for doctors or academics and so were happy to ring them up on the off-chance they might be willing to help (and almost all of them were). Dominic and Colin churned out press releases and slicked and oiled their way into more media outlets, more radio shows, fresh websites, new countries, more patient groups.

An energetic 28-year-old American campaigner with neuroendocrine cancer, Catherine Cooling Davis, read about the effort on the internet and coordinated fundraising in the United States. I flew to Sweden to talk on Swedish television; to Canada to talk at an international conference; to Finland, to try to get a clinic there to produce Prof Essand and Dr Leja’s virus on the double-quick. I still hadn’t the faintest idea what I was doing. My plan was, just make a noise. Somebody will hear. We became a headline hit in Croatia.

Within four months, we’d raised more than £200,000. This extraordinary public generosity allowed Prof Essand and Dr Leja to save time and restart work while we continued to raise the outstanding funds elsewhere.

In January, a whisper started. A major donor had read the publicity and was interested in funding the entire outstanding amount. I hoped whoever it was would be a ruthless business person, somebody in a greedy, tough line of work, who would know how to kick Swedish scientists into sound business shape. Large amounts of potentially life-saving research never reach the market place simply because the researchers have been too ditsy to sort out the commercial side of their discovery. I didn’t want a funding angel for Essand’s virus, I wanted a funding demon: somebody with bloodless eyes and knuckles of steel.

We got him. Last month, he confirmed his donation in writing – roughly £1.4  million. He’s Vince Hamilton, an oil man. He has petroleum fields in Oman, Lithuania and, improbably, just outside Paris. His favoured method of extraction is fracking – he thinks all European anti-fracking environmentalists are in the pay of Vladimir Putin and Gazprom – and he has neuroendocrine cancer.

Troubled waters: oil man Vince Hamilton in Geneva (Pic: Andrew Crowley)

When he offered to fly me to Geneva to visit him, I leapt on the first ozone-destroying plane I could find.

I wish I could report that Mr Vince Hamilton is an ogre of industry. He is 49, bronzed, gently spoken and lithe – partly from build, partly from illness. Like so many sick people, he has the habit of gently touching the back of one hand with the fingers of the other, as if to reassure himself that he is still there. Mingled among geology books in his vast attic office are glass baubles in the shape of liquid drops, and toy road tankers, each of which contains a black slurp of petroleum and celebrates a successful drilling.

He gestured me to those Swedish-designed chairs shaped like oil barrels, and when I sat in one, it broke – crack! I leapt up, appalled. ''That happens – they’re antiques,’’ Vince smiled, unperturbed. ''I’ve been told that Mr Putin has the same chairs in his office.’’

A large part of what appeals to Vince about funding the Uppsala virus, he says, in a disappointingly selfless voice, is that he will not be the only beneficiary: trials cannot be run for one person alone. Vince’s money will ensure that 19 other patients also get the chance to test the new virus in the first trial. ''Eighteen others,’’ I corrected him sharply. I am not selfless. ''Dido is also going on that trial list. That’s my fundraising fee.’’

In reality, neither Dido nor Vince is actually guaranteed a slot. The trials won’t begin for at least another year and there will be ruthless exclusion criteria to ensure the results are scientifically meaningful and patients aren’t put in pointless danger: if your blood test results aren’t right during the time Uppsala is recruiting, you won’t be allowed to join.

The way Vince made his money was by going into what oilmen call a ''Moose Pasture’’, a parcel of land that, for some reason, has earned a bad name for itself: it’s fit for nothing but grazing moose. Vince’s moose pasture in Oman was a parcel of land known as Blocks 3 and 4. Everyone thought it was too far away from the main oil field, so there was no point buying up the rights to drill there. Vince proved that everyone was wrong and his company, Tethys Oil, is now worth $350 million (£223.5 million).

''I think of funding medical research as like an exploratory oil well. It costs about the same to sink a new well as it does to run a clinical trial – roughly two million,’’ he said, not bothering to specify the currency. ''And the chance of success is low, but hit the well, and wow!’’ He settled back into his chair and again began stroking his hands. ''I don’t know why more business people don’t do it. And I really don’t understand why Steve Jobs didn’t do it. He could have funded every single decent research project into his illness in the world and maybe got himself and every other person with this disease half a dozen potential new therapies, all within time to save himself.’’

After flying to Uppsala to demand that Prof Essand and Dr Leja draw up a proper business plan if they wanted his petrodollars, the next thing Vince did was jet across to Baylor College, a well-respected virus brewery in Houston, Texas. He wanted to cut a deal on producing industrial quantities of top-quality bug – Uppsala doesn’t have the appropriate facilities. Vince’s business skills saved about £64,000 on the cost.

Medical research needs such men and women. The case of the Uppsala virus is not unique. According to scientists I have spoken to, every year dozens, perhaps hundreds (by definition, nobody knows the correct figure), of potential life-saving therapies are thrown out because no one will provide the small amount of money needed to get the research to the next stage of the development process – £100,000 at the low end; a couple of million at the high. It would be a simple task to draw up a shopping list of such projects, along with a precise funding cost, how soon to expect results, and send it out to rich people with a personal interest in the relevant disease.

What Vince’s and the 3,846 other donors’ money represents is not just a chance to find out if the Uppsala virus works and might help to save lives, but a breakthrough in the basic idea of how science can be financed. Advanced medical research is not the exclusive domain of pharmaceutical companies and slow-moving, committee-driven charities and governments. With energy and generosity, a little internet research and a good Skype connection, ordinary people can step in and direct world-class medical work in a responsible, scientifically valuable way, so that instead of being dumped in a freezer and forgotten, it once again stands a chance of benefiting ordinary patients.

iCancer has already got its eyes on another potentially life-saving project: this time it’s in the US – Seneca Valley virus. Again, the science is superb, the lab results are outstanding … and the medics broke. A few days ago the head of the research company emailed me: for $2 million (£1.2  million) they could revive two extremely promising ongoing trials into lung cancer and children’s brain tumours – both of which are often forms of neuroendocrine tumour. For $5 million (£3.1 million), they would broaden out the trial work to include other cancers. And if the indications are good, they could quickly manufacture enough of this therapy in the bubbling vats at Baylor to begin treating patients on a compassionate-usage programme. The cost of that, all-in, would be a piffling $10 million (£6.3 million) – roughly what Apple earns every two and a half hours.

'Hope and maybe, one day, a cure' - Dominic Nutt writes

Almost 18 months ago I was told I had a rare cancer, a neuroendocrine tumour for which there is no cure. If it spread, doctors would have been forced to move from trying to kill my cancer, to managing my death.

My story is punctuated by good news and bad. So far, there is no sign that, following my operation, the cancer has come back. But the fear that it will hangs over me, my wife, Glenda, and our young daughters.

So when Alexander Masters wrote his brilliant cri de coeur in this paper last September, bubbling with frustration that a potential cure for his best friend Dido’s cancer was sitting in a freezer in a Swedish university lab, destined never to be tested for lack of the sorts of money a health department could lose down the back of a settee, I decided to take action. I emailed Alexander about how we could raise the money.

As soon as I spoke to him, it was clear we could. His gentle effervescence, energy and sweet-smiling inability to take no for an answer makes him an irresistible force of nature.

With him and my friend, the queen of social media campaigning, Liz Scarff, we climbed the mountain – in double-quick time. In the piece I wrote for the Telegraph about my disease, I said I felt lucky – lucky to be married to Glenda who supported me through it all. Lucky to be treated by my consultant, Rob Hagger, and lucky my disease was caught early (and completely by chance).

Today, I want to add to that list. I am lucky that Alexander is who he is, and that I know Liz Scarff, who made the impossible happen. And I am so grateful to the Telegraph and its readers who have been the bedrock of this campaign’s success. This newspaper has grasped the craziness of the fact that potential cures for cancers are out there, with no one to fund them.

And readers have responded, in droves, recognising that if no one will step up to fund a cure, then we can – and will – do it ourselves.

Perhaps, crowd funding cancer research projects is the way to go. Pharmaceutical companies cannot afford to invest billions into curing rare cancers, because even though rare cancers added together affect more patients than the common cancers – around 53 per cent – the fact is that alone there are not enough patients to justify the expense of developing new drugs.

So, maybe, the Uppsala research will, one day save my life and the lives of the 1,200 others in the UK who are diagnosed with a NET each year. Or, as is the way with science, it will lead to another, different, unexpected leap forward for cancer sufferers. Whatever – it is worth the effort. It is right that we find out.

On behalf of my wife, my children, Alexander, Dido and the countless thousands with incurable cancers, to whom you have provided hope, and maybe one day, a cure, I thank you.

What is neuroendocrine cancer?

Neuroendocrine tumours (NETs, also known as carcinoid tumours) occur in the neuroendocrine cells. These are located throughout the body and their function is to produce and secrete hormones, such as adrenalin, into the bloodstream.

NETs are rare – around 1,200 new cases are diagnosed in the UK every year. The most common types develop in the small intestine, appendix, lungs and pancreas and they can be benign or malignant: a NET is only called a cancer once it has spread.

As with many cancers, the causes of NETs are uncertain. But research has shown that certain types of NETs are genetic, and people over 60 have a higher chance of developing them.

Not all NETs produce symptoms; in those that do, the symptoms depend on where the NET develops – they may cause localised pain – and whether hormone production is affected.Doctors will diagnose NETs through a variety of tests but there is a specific scan called an octreotide scan, which involves the injection of a radioactive chemical into the body to highlight any tumours.

Because of their relative rarity, treatment for NETs is much less advanced than it is for more common cancers. If a NET is benign, it may be surgically removed; if malignant, treatment is generally aimed at relieving symptoms.

Chemotherapy, somatostatin analogues (drugs administered by injection to control symptoms) and radiotherapy are all options doctors may advise.

Olivia Parker

iCancer

For more information and support on neuroendocrine cancer, visit Net Patient Foundation or call 0800 434 6476